October is Down syndrome awareness month. Our campaign this month is called ‘A Day in the Life’. Throughout the month we will be sharing blogs from our community about what it’s like having someone with Down syndrome in their lives. Today we share Cian’s story, written by mum, Emma.
If I am honest, before Cian, I could have not imagined being a parent to a child with additional needs, I don’t think it ever entered my head, it was not part of “the plan”, it was not expected.
I often reflect on Cian’s first days…how we reacted…how we responded…I guess that this is why I wanted to write this, I don’t think our experiences were that different to others.
There is nothing in the world that will prepare you for a birth diagnosis of Down syndrome, we had a very “straightforward” pregnancy, all pre-natal screens came back without any “concerns”. I really don’t know how we would have reacted if we had a pre-natal diagnosis but I am not going to focus on this, everyone’s journey and decision making is unique and different.
On day two we were given a Hirschsprung’s Disease (HD) diagnosis which complicated his journey significantly. For those of you new to HD, it basically means that, due to a lack of nerve cells (ganglion) in Cian’s bowel, he wasn’t able to poo. Hirschsprung’s isn’t a nice disease, it’s unpredictable and difficult to manage. I’m not going into too much detail but let’s just say it pushed Cian to the limit. I will admit that our Hirschsprung’s journey has been a challenge….and if I’m honest, this is probably the one thing I would change about Cian. But when you see our little man bounce back from a 17 hour surgery and be home in 3 days is truly amazing, his resilience is truly inspiring.
For the time being all things “bowel” seem to have settled and we are starting our toilet training adventure…wish us luck!
So, what would I say to you about our life? To say we are very busy is an understatement: but then again, I don’t know any parents (who both work) of 2 children that aren’t busy. Sure there are the additional appointments, but alternatively we have swimming/cubs/football for my other son to coordinate.
We have similar worries for both our boys, about friends, school and the future, I have guilt about working but then again, I want my children to benefit from integration with their peers. Cian attends a childminder and also preschool. His speech and development may be delayed, but that doesn’t stop him! He may find it difficult to walk but he will never let you know he is tired; he is the opposite, he wants to run! He may be smaller than his peers but he will still want to climb that frame higher than them! Although his language is limited, he will certainly let you know if he wants something!
Cian honestly doesn’t let anything stop him, he has a strength of figuring things out it out in his own time. Whether it’s escaping from his cot or accessing his brother toys, he will get there if he wants it!!
I am very proud of our little family and particularly of what both children have brought to us. Cian is a hilarious, bossy and opinionated 3 year old… although Down syndrome is integral to him, it does not define him. We are very aware that he is changing perceptions, opening up conversations, and influencing , just by being himself. We immensely proud of the person he is and is becoming.